Esme Lyra

Here today...

2010-04-09T17:17:00.000-07:00

How is it that we went from this on the weekend...

... to this today?

OK, so that isn't Cameron standing outside our house. And maybe that isn't a totally accurate picture of the weather today. But still. It's snowing here.

And isn't that bad enough?

Hans Lady

2010-04-05T08:41:00.000-07:00

Esme has auditory processing difficulties. Which means that she hears (or interprets) words differently than most people.

Esme uses a lot of echolalia. Which means she repeats things she has heard over and over, often for no apparent reason.

Together, these two things make for some interesting (if not confusing) phrases being repeated over (and over and over) around these parts.

Such as...

It's time sit by ba-fa-day. ("Its time to sit by the wall today" - a song they sing at dance class)

Oh! Oh! Oh Hans Lady! (no idea)

Wha-mama!! (There is no way to type how crazy this sounds when she says it. It started as Chip from Beauty and the Beast saying "What's there mama?" and its turned into a monster scream of "wha-mama!!!")

Tins-ol-time, tins-ol-time! (Tale as old as Time, from Beauty and the Beast)

Here it goes! (no idea)

Make a me! Make a choice! (our best guess is The Little Mermaid, but its still a bit of a mystery)

ohnooooo Watchoutnooooo! (no idea)

Wait wait please! (Cinderella)

Surprise! Surprise! (Cinderella)

My fave it the 'Oh Hans Lady' because I have absolutely no idea what its from. And because its so cute. And because I like the Star Wars reference.

Like most Esme things, every now and then I get all caught up in how much I wish she wouldn't repeat these things over and over, how.... 'not-normal' it is. But I mostly I enjoy hearing her voice, and laugh when her words make absolutely no sense to anyone but her - and laugh even harder when her strange words suddenly make more sense than anything anyone else is saying! And like everything else, one day these strange words will stop. One day she will say more meaningful things and less random things. One day I will miss hearing about the 'ba-fa-day' and 'tins-ol-time' the same way I miss being called "My" or talking about "Lodie" babies. Now I'm Mommy and the world if full of "little babies' to explore.

Until these strange words change or fade away, I will smile whenever she starts going on (and on) (and on) about "Grumpy, Sloopy, and Doc." I will sing "There may be something there that wasn't there before" just to hear her scream "Wha-mama!!!".

And I will delight in every "Hans Lady".

2010-04-02T05:55:00.000-07:00

99% of the time... or maybe 80%... ok, I'm not 100% sure of the percentages, but lets just say MOST of the time I am totally at peace with Esme's autism. I am totally at peace with who she is and what she can do.

I don't define Esme by her autism, because anyone who knows her can see that she is so much more than that. I love her feisty spirit. I love the way she yells "Mama, Mama, Mama!" whenever she is upset, even though she calls me "Mommy". I love the way that she takes her clothes off as soon as we walk in the door and puts on her princess dress up clothes - every time. I love the way she always matches her dress up shoes to her dress up dress. I love the way she is becoming her own person - hating all the clothes I like her to wear and pitching a fit when I try to put something brown or green or blue (read: not pink or purple) on her. I love the way she has become so far removed from who I am and who Cameron is and has totally and completely become who SHE is.

But I would be lying if I said I didn't want more for her. I want her to be able to do anything she wants in life. I want her to make and keep friends as they get older and more sophisticated in their social skills. I want her to be able to tell me what she is thinking and what she is planning. I want her to feel comfortable in her own skin. I want to be able to assume that she will be able to live an independent life. I want to be able to assume that she will have the opportunity to become whoever she wants to become.

Its that part of autism that drives me crazy. I feel like I can't prepare myself for caring for Esme when she is an adult because I don't know how far she will progress. I can't totally enjoy her as-is when everyone is telling you that more intervention means a 'better' adult outcome. I don't want her childhood to be seen only as a precursor to adulthood - a time of therapy and work to get to the part of life that 'really matters'. I want her childhood to matter, and to be whatever she wants it to be. But on the other hand. I don't want to short-change her and not give her every opportunity to succeed.
Sometimes I do wish I had a crystal ball so I could look into the future and see what it holds for Esme. Because if she is living in a group home and volunteering at the Humane Society, if she is living with a roommate and working a simple job, if she is in university getting her PhD, I would be ok with all of that. It's the not knowing that makes me crazy. Maybe not so much not knowing as not-being-able-to-assume. Or dream.

But Esme keeps us living in the present. To Esme, there is only the present. And so we spend our presents dancing to "Tale as old as Time" (or "tins-ol-time"), playing with 'prin-tense' dolls, watching 'Beauty Beast', and matching our purple shoes to our purple dresses.

One thing I am sure of is that this is not what I was expecting when I was expecting Esme. This is not the life I planned. This is not the child I imagined.

She is 100% more wonderful than I ever thought she would be. And that is one percentage I am sure on.

2010-03-29T19:12:00.000-07:00

We begin to find and become ourselves when we notice how we are already found, already truly, entirely, wildly, messily, marvelously who we were born to be.
- Anne Lamott

Dance Class

2010-03-28T20:29:00.000-07:00

Long-Overdue Esme Update

2010-03-19T11:23:00.000-07:00

We will be starting a new therapy with Esme (called RDI - Relationship Development Intervention) in April. We are really looking forward to having another structured type of therapy going on in the house.

Esme has been enjoying her preschool and seems to have made a couple of friends - they like her and say hello to her, and she ignores them. Unless they are running around, then shes right in there!

We have offically decided not to send her to kindergarten next year, and I am really looking forward to having her home with me.

Esme has been attending dance class since February. She is getting into it and is actually doing some of the things the other little girls are doing. She loves looking in the mirror though, so the huge wall-sized mirror in the dance room is a pretty big distraction!

Esme has spent the last week very sick with a flu, and all that weight we worked so hard to put on her has fallen right off. Back to square one!

We have been loving the spring weather and have gone on more than a few walks along the river, to the park, and just around the block.

Now that things have settled down and we are back into a good routine, I am looking forward to getting back into posting regularly on the blog.

Pictures soon - including dance class! A must-see.

IBI Not-So-Happy Ending

2009-12-30T11:02:00.000-08:00

Well, it's official. We figured as much, but right before Christmas we found out that Esme does not qualify to have her IBI therapy covered by the government. The reason? She's doing too well. The reason? (Among other things) Her IBI therapy.

It is so ridiculous and disgusting. The fact that we have paid for therapy for her, that we have spent every extra dollar we have (and some we don't), have asked friends and family and strangers to help us provide for our daughter only means that now she is considered to be "moderate-low" in her abilities, and thus is ineligible to receive IBI.

We asked if it meant anything at all that a mere 8 months ago she was diagnosed as non-verbal, severe autism. It doesn't. Because we don't "know" that it was the IBI that helped her get better. Even though research shows that IBI is the most effective therapy, even though the government only funds IBI therapy, we can't be sure it was the IBI that has helped her progress. I think I should put a call into the local hospital... we are paying for all this chemo and radiation for cancer patients, but how can we be sure that its the chemo getting rid of the tumour? Sometimes they just get better by themselves, after all. Think of the money we could save! Ridiculous.

So, according to the IBI center, Esme is best served with community supports. You know, the 30 minutes a week of group speech therapy she receives. Oh, did I say every week? I meant every other week.

The worst part of it all is that the lady who gave us the news actually said that its kids like Esme, who have the skills she has, who do the best with IBI. Who go on to attend school without a ton of (or any) support. Who go on to have jobs and live independent lives. Who really bloom with IBI therapy. But in Ontario, that comes with a big IF. They do the best IF their parents have access to an extra 50000 plus a year to fund a full-time therapy program.

We do not.

And so we are at a cross roads. We cannot indefinitely fund IBI programs for Esme. Even another month is out of the question right now. The choices we have are all difficult, and there is no real light at the end of the tunnel, money wise. Raising enough to fund a full time IBI program is more than I have energy for right now.

We have a few new therapy options we are looking in to. I will continue to do IBI type activities with Esme to try to build her skills.

It makes me so sad though, to know that as hard as Esme has worked, she now falls through the cracks. Our kids deserve so much better than this.

Merry Christmas

2009-12-29T12:10:00.000-08:00

2009-12-16T07:59:00.000-08:00

Untitled from Jane McRae on Vimeo.

Esme at her Christmas Concert (she's the one in the pink shirt and grey dress on the far right).

Piano

2009-12-13T16:29:00.000-08:00

Esme tickling the ivories

Snowed-Out

2009-12-09T08:35:00.000-08:00

We were ready to go.
I was prepared to deal with whatever they said.
Cameron took one of his few vacation days so we could go together.
One of our friends said she would watch Esme while we went to the appointment.
We were prepared.
It snowed.
The appointment was cancelled.

Sheesh.

On the plus side, Esme and Cameron made a snowman this morning and threw snowballs, which made Esme very happy.

We are waiting to hear when our next appointment will be. Call me crazy, but I am feeling January or February. Parents of kids with special needs should be required to have a university degree in Waiting.

Tomorrow

2009-12-08T12:55:00.000-08:00

Tomorrow is the big day. Well, maybe not THE big day, but it's A big day. Tomorrow we go and meet with "The Man" and find out if Esme qualifies for government covered IBI therapy. I don't want to be all negative, but I really, really, really think they are going to say that she is doing too well to receive IBI. And that will suck.

Yes, Esme is doing well. She is potty trained, she can tell us what she wants in the moment, she enjoys playing with other people and is learning lots of new words.

But she isn't able to speak about thoughts she might have. She has never asked a question, ever. She doesn't play with toys at home, she just walks around. She doesn't pretend. Learning new things takes time and work, and lots of it. Her friends are taking off, and will soon be leaving her behind. They want to play together, and she gets angry and confused and shuts down.

I want more than this for Esme. Not because I am not happy with who she is, but because I have seen the potential in her. I know she can go so far. She learns quickly when she is motivated. She wants to learn things, and use her knowledge and new skills. She can go far. She has gone far.

I don't expect Esme to be "normal". I love her and accept her just as she is. But I will not accept anyone telling me that she has come far enough. That the most I can ask for is potty training and not self-injuring. Since the moment we said "Esme isn't developing normally" back when she was 19 months, we have received eighteen 45 minute occupational therapy sessions and six 40 minute speech therapy sessions (in a group with 3 other kids). That's it. Esme is over 3 years old now, and was non-verbal at the time of her diagnosis (at 2.5 years old). That is the therapy we have been provided. We have paid for 30 minutes a week of speech therapy since she was 20 months old. We have paid for 9 hours a week of IBI. We have paid for preschool. We have paid for our naturopathic doctor and the supplements he prescribes. We have paid for it and Esme has improved. And because she has improved, we might hear "We aren't going to pay for it" from OHIP tomorrow.

It will be so much easier if I know that Esme is on the waiting list for IBI. The wait list is years long, so our work with her is far from over. Regardless of what they say tomorrow, we will continue to fund Esme's therapy ourselves, with the help of family, friends and everyone else who has supported Esme.

It will just be so much easier to know that help is on the way.

Santa Claus Parade

2009-12-07T08:56:00.000-08:00

Esme loved the Santa Claus Parade!
She especially loved the creepy people in semi-filthy costumes...
and dancing to the bands, of course! (note that Esme is in mid-jump in this picture.)

Playing Catch Up... part one

2009-12-03T17:49:00.000-08:00

Yeesh, where has a month gone?!? Life has taken hold, and I'm afraid that blogging has fallen down quite low on the "Important Thing To Deal With" list.

I will try to do a bunch of posts to catch up on all the things that have happened this past month...

First, we went to Toronto to spend the night at a hotel and attend an Autism conference. The conference was great, and Esme really enjoyed the hotel. She would totally be a great vacationer if, you know, we had money to do that kinda thing! She was really into the whole hotel thing.

See?

Since the conference fell over Halloween, we did some Trick or Treating at the hotel. Esme didn't really 'get' the whole thing, but she enjoyed walking around and seeing the hotel.

Mostly she loved the hotel playroom, which was well-stocked with toys and crafts. And the pool, of course. The girl loves to swim.

Oh, and they had fish.

We also hung out at the university, where Esme and her Nanny (Cameron's mom... Nanny like grandma, not childcare person!) snuck into buildings and generally hung around while Cameron and I finished up at the conference.

It was a great weekend, and so informative. Afterwards, Cameron and I really felt like we knew a lot more about the biology of Autism, learned about some different therapies we wanted to learn more about, and felt like we got our game plan a little bit more solid when it comes to helping Esme be the best she can be. Which, if you ask me, is gonna be pretty darn great!

(Please pardon the crazy spacing on the pics in this post... after 20 minutes fighting with Blogger to let me put a space after the text, I give up. You win this round, Blogger!)

Gnome, Sweet Gnome

2009-10-28T12:10:00.000-07:00

GNOME, n. In North-European mythology, a dwarfish imp inhabiting the interior parts of the earth and having special custody of mineral treasures.

Almost back

2009-10-28T05:22:00.000-07:00

Please pardon me for being away - it's been one of those weeks. I don't have any news to officially report, but I've been trying to get my ducks in a row for what I consider to be an inevitable outcome of one of Esme's appointments this week.

It's been tiring trying to figure everything out.

I am just about to wake Esme to schlep her over to her speech therapy session. We have to take the bus today. And it's raining out. I could call and ask my friend for a ride, but she needs to use my car seat in her car, and I left Esme's car seat out in the rain all night. Of course.

I will post more about what's been going on in Esme's life soon... but until then, here is a pic of Esme at my dad's wedding this past Thanksgiving weekend.

I'll be back with more details and pics soon!

Farm Field Trip

2009-10-14T09:01:00.000-07:00

Colour Matching

2009-10-07T14:12:00.000-07:00

"Ah-dit!!"

(translation: I did it!)

Growing Pains

2009-10-06T18:25:00.000-07:00

Three has brought some pretty big changes to Esme's life. Some have been easier than others. Some are happy changes, others sad. All of them bring with them an adjustment period as we all get used to growing up.

One big change is that Esme is no longer sleeping in a crib. Nope, she has moved into a "big girl bed".

She's hot and cold on the whole thing. While she does like laying in her bed, she is nervous at night and wants me to lay with her. She's been falling asleep sometime around 10 or 11 most nights, and calls for me all the time (just a little brag - she calls for me by yelling "I want Mommy!") She also tries the ol' "I want potty" trick to get out of bed too. And it works every time.

Because her sleep as been off, she has been tired during the day, and has even had a few naps here and there. A nap means a really late night, so that makes things even worse. She's been sleeping in like a teenager (10:45am was the latest this week), which would be fine except that we have to been on the road by 8:45am some mornings to get to therapy. She is quite a bear when I have to wake her in the morning. I wonder where she gets that from (Hint: It's not me.)

She would have had no problem staying in her crib. She was happy there, never tried to get out, and certainly wasn't too big for it (at 27 pounds there are infants who weigh more than she does!). But, after much deliberation, Cameron and I decided to get her the bed. It's so easy to let her stay a baby, to do things for her and to treat her like a child much younger than 3. Esme does not have that preschooler "I do it myself" drive. She doesn't push for independence. But when we give her a nudge, she rises to the occassion and shows us that, yes, she was ready for it.

Or, you know, she falls to peices and we see that no, she wasn't ready for it!

Esme may be just learning to talk, and she may be the size of a 2 year old, but she is a three-year-old now. She is supposed to start kindergarten in less than a year. While there are times when we would like to keep her a baby forever, she is getting older. She is learning and changing and growing every day. Some things come easy to us, some are really challening, and some things (like the new bed) fall somewhere in between.

We've got a lot of growing up to do. Growing pains and all.

3

2009-10-01T19:10:00.000-07:00

zero

one

two

three

Happy third birthday to our best girl!

The Final Vestiges of 2

2009-09-28T19:52:00.001-07:00

Can you guess what Esme is doing?

I mean besides wielding that Stick Of Doom.... errr... toy fishing rod. And besides scaring her Grandparents with her sweet ninja moves, taking an eye out, or that 'OT nightmare' sitting position (she loves that W sit!).

Give up?

Why, she's getting ready to turn 3, of course!

We are in the final stretch of 2, with only Tuesday and Wednesday to go before the big 3! Well, I guess she won't truly be 3 until 9:15 at night on Thursday, but since she will be asleep by then we will go ahead and celebrate during the day.

Esme has been enjoying the last moments of 2. She has celebrated her birthday with her Grandparents, Uncles, Muzzie (great-grandma) and her Daddy and I. She has had a bunch of play-dates, and has been thoroughly enjoying school and gymnastics. She has made some new friends.

And she's been doing a lot of this.

Because what says "2 about to turn 3" more than avoiding posing for your Birthday-Party photo by refusing to sit still and running around on Nanny's hot-tub-cover.

Well, maybe this.

Lovin' That Noise!

2009-09-22T13:56:00.000-07:00

My heart's in the Highlands, my heart is not here,

My heart's in the Highlands, a-chasing the deer;

A-chasing the wild deer, and following the roe,

My heart's in the Highlands, wherever I go.

Robert Burns

(Esme and her buddy at a local Scottish festival, listening to the bagpipes!)

Clowning Around

2009-09-20T16:46:00.000-07:00

This

is why

the world

loves

a clown!

Esme's Bedtime Book Review

2009-09-18T04:36:00.000-07:00

Looking for some great books to read with kids? Just ask Esme. Esme is an expert on many, many books. Especially these four. Because she reads them numerous times a day, and has them read to her every night. Every. Night.

The classic "Just Go To Bed". Starring Little Critter, or "Hoppy", as Esme calls him. Hoppy avoids going to bed by playing with all his toys. Dad plays along as Hoppy goes through his bedtime routine, but eventually tires of it and tells him "Just Go To Bed!!" Hilarious, I assure you.

The highlights of this book include finding the mouse on every page, saying what the mouse is doing, the word "pajamas", and, of course, the part when Hoppy hops around like a bunny.

A must read. At least once a day.

Another classic. In "Where the Wild Things Are", Max is sent to bed (without eating anything!) after a day of acting like a Wild Thing! Suddenly, his room turns into a magical world and Max meets REAL Wild Things. He has a great time, but misses being where someone loves him "best of all".

Highlights of "WTWTA" include; the part where he chases the dog, making Wild Thing noises, the phrase "yellow eyes without blinking once", the whole "wild rumpus', more Wild Thing noises... according to Esme, the whole book is a highlight!

Another classic by Maurice Sendak. In this book, Papa has gone to sea and Mama is pretty despondent about the whole thing. Ida is left to care for her baby sister, but does a poor job of watching her and goblins steal the baby away. To be their bride. Because goblins are weird like that. Anyways, Ida takes her trusty Wonderhorn and sets off to save her sister.

Highlights of this book include; the baby... Esme just seems to really like this book. She reads it to herself all the time.

And finally, One to Ten and down again. The book we dread having to read. Also called "Balloon" around here, this book is Looooong. And repetitive. And its the last on the list of books we read before bed (see books above). We probably wouldn't dislike it so much if we were reading it at any other time, but by the time we pull this book out its usually coming up on 9:00 and we are loosing our voices. I think I can stand it more than Cameron. Nevertheless, in this book, a big red balloon appears in the sky, and any time anyone touches the string... up they go! All ten of them. And you can count them all each time.

Highlights of this book include; remembering the names of each of the people (especially #4 Tom Knockatthedoor), saying what each person says (especially "shoo shoo shoo"), when the balloon smiles, and the baby at the end of the book.

So there you have it. The current Greatest Books of All Time. Or at least of Bedtime.

Gymnasts and Babies

2009-09-16T18:04:00.000-07:00

Esme has decided that her gymnastics teacher is the Bee's-Knees.

Every Saturday after breakfast, we head out to gymnastics class to watch Esme run around with 15 other 3 year olds in what I can only describe as semi-organized chaos. Semi-organized may be stretching the truth a little bit.

The class has 3 teachers; two female, one male. Esme has apparently (as of her last class) decided that the female teachers are terribly boring. The male teacher, on the other hand, is the greatest-person-in-the-world. Ever.

Esme spent most of the last class standing right next to him. Or cutting the obstacle-course circuit short so she could double-back and do a hand stand with him again. Or casually reaching up and holding his hand.

When her group of kids would move from one piece of equipment to another, Esme would give the new activity a try, deem it nowhere near as interesting as the aforementioned male teacher, and jog back over to his station to hang out.

Oh, and she copied him.

Copied his every movement. Even when he got hit in the.... *ahem*.... you know..... and fell to the ground, there was Esme, rolling around in pain next to him, sound effects and all. She leaned against the wall with him while he tried to regain his composure. She helped him count at 'hide and seek time' rather than hiding. She pretty much did whatever he did.

We saw him do a back flip from standing the other day, without even touching the ground! I'd like to see Esme copy that!

In other news, today I found a little sample bottle of the shampoo I used on Esme when she was just a tiny baby. The smell of it reminded me so much of having a tiny, sleeping baby in my arms... So I spend a little while looking at old pictures of Esme, remembering those quiet (and not-so-quiet!) days.

I must say, I am actually missing having a baby around now that I am living with Miss "No bed! No bed! No rest! No night-night! Go away Mommy!!!!"

Not that I'm complaining. There is no sound sweeter than your child stringing together words on their own. Of course, "I love you Mommy" is a little bit sweeter than "Go away Mommy". But not by much.

We're back! And first day of Pre-K!

2009-09-13T15:37:00.000-07:00

No, I haven't been abducted by aliens or fallen off the earth or anything so dramatic. We have been busy as bees around here getting ready for our home-preschool, starting home-preschool, getting ready for pre-k, starting pre-k, filling out and mailing forms, setting up new therapy program, starting new big-kid-gymnastics class, doctors appointments... oh, I could go on.

Big news! Esme had her first day of preschool. She loved it! She was a little quiet when I dropped her off, and her aide said she cried a bit and said "I want Mommy!" (yay, Esme!), but then she settled in and by the time I picked her up, she was happy and playing!
The next time we went she said "I want babies (the dolls in the doll center), I want Susan (her teacher), I want cake (her favourite cupcake toy)!" She happily went into the class without me and waved goodbye! When I came to pick her up she wanted to go down the slide one more time but told me "No Mommy. I want Lo-see (Lois, her aide)". I watched while Lois helped her down the slide! *cry*! I've been replaced!
Never fear, she was happy to come home and told me the next morning "No Lo-see!". Luckily it was not a school day.
Here are some pics of her first day of school. She was not interested in posing for posterity. Ah well.

The obligatory Thomas the Train backpack.

More updates to come, including... Esme's first crush!

(almost) Offically Homeschooling

2009-08-25T20:47:00.000-07:00

I guess I won't really be officially homeschooling until next September when Esme is old enough to attend public school, but I ordered (or should I say, my mom ordered for me) a Preschool homeschooling curriculum for Esme. Even though Esme will be attending a regular preschool this year (starting in two short weeks!), I will also be homeschooling Esme, with the intent of continuing homeschooling next year (junior kindergarten) as well.
The curriculum is pretty easy going, and we won't we working on any 'school skills' (eg. ABC's, reading, math...) yet. The curriculum focuses on art, handicrafts, purposeful work, and the rhythm of the day.
I will also be using this curriculum to run a small preschool out of my home, 2 mornings per week.
I am really looking forward to starting homeschooling with Esme. It should give a little more structure to our time together at home, and should motivate me to continue finding different ways to engage Esme and get her interested in the world around her (and not just the world in her head, which, to be honest, seems a lot more interesting than the world around her sometimes!).

Special Exposure Wednesday

2009-08-19T09:28:00.000-07:00

Popsicles. The best part of summer.

Too-Hot

2009-08-18T20:51:00.000-07:00

Tonight Esme asked for fries for dinner. She was dancing around my feet as I put them onto the baking sheet, obviously too hungry to wait the obligatory 15 minutes before they would be cooked. In a somewhat desperate attempt to avoid a meltdown, I let her pick up one of the frozen fries and try to eat it, while I told her that they were too cold and needed to be cooked.
She happily picked up the fry, but her face dropped as she realized how cold and hard it was. It barely made it to her mouth before it was declared "Yucky" and thrown back onto the baking pan. I popped the fries into the oven and went back into the living room to try to get Esme interested in a toy while her dinner cooked.
Esme played for 10 minutes or so before running back into the kitchen and crying for her dinner. Suddenly her crying stopped and she ran back into the living room and said to me "I want fries. I want too-hot fries. Okay!"
Luckily when we checked the oven the fries were all done and Esme tucked into a dinner of kidney beans, peas and too-hot fries.
Yum!

Wishfull thinking

2009-08-18T07:40:00.000-07:00

There are many, many times where I totally accept Esme's autism. Where I see it as a blessing, or as just-a-part-of-the-girl-I-love-so-much. There are many times where I enjoy making appointments for Esme, researching treatment / therapy / funding options, where I enjoying calling organizations and seeing what services they provide. I enjoy being able to talk at length about Esme and her struggles and triumphs. There are many times where I love belonging to the 'special needs parents' club, love meeting with other parents of special kids and chatting about all things 'special'.

And then there are times like this.

Where I would like nothing more than for Esme to wake up and start talking.
Where I start panicking, wondering what the future will hold for Esme, if she will ever be able to communicate, go to school, make a friend...
Times like this where I just want to scream "Why aren't any of these treatments working??? Why is she not better yet?? Is there something else I should be doing? Or not doing??"
Times like this where Esme's refusal to eat isn't just Preschool picky-ness, but worsening sensory issues. Where her tantrums aren't just a grumpy, hungry, not feeling well kid, but another regression. A sign of worse-things-to-come.
When I wonder how I will ever have space in my life for another child.
Times like this when I just want to say "Wait, there's been a mistake here. This isn't the life I wanted to have. This isn't what I planned. I should be making cookies and joking and laughing with my daughter. I should be answering 400 questions a day. I should be planning on baby #2, taking to Esme about being a big-sister, looking into private schools for kindergarten." I don't want to be checking all foods for hidden ingredients, force feeding after days of refusing to eat, teaching Esme to ask for an apple and not just cry, feeling sad at the thought of never having another baby, and feeling almost as sad at the thought of another one, wondering how in the world I am ever going to send her off to school.

But that is my life.

Of course, we also do a lot of laughing and playing. We smile at Esme's antics, and make up silly games to play. We marvel at the baby-steps Esme takes. Her first sentence. Learning to point at pictures. Being able to answer the questions "What's that?" and "What's he doing?".

And when I really think about it, Esme is doing so much. She smiles at us, she asks us to play. She tidies up, she says "Thank you". She tries to talk. And she's not even 3 yet.

Usually I am 99% satisfied to be Esme's mom, just the way she is.

Sometimes I just wish things could be easier for my little girl. And for our family.

But that's just wishfull thinking.

Quiet time

2009-08-05T11:11:00.000-07:00

It's quiet time around here. After a loud morning. I'm getting back to my daycare roots, watching 3 kids (plus Esme) today. One has headed home already, one will be going home in a couple of hours, and one is here for the long haul and will be headed home sometime this evening!

Esme has done OK with the extra bodies in the house, but she definitely likes it more when there are fewer kids. One friend is fine, for a while. After 4 or 5 hours, she is ready to get back to her normal schedule.

She gets overwhelmed with so many kids here. And frustrated. And some not-so-nice behaviours start coming out.

So far this morning we have had 2 huge meltdowns and 3 head-banging incidents. When its just Esme and I, this is unheard of. But with the added stress of a friend or two in the house, Esme's ability to deal with stress is greatly reduced. And she is reduced to a puddle-of-mad on the floor.

Little things that would be easy to deal with (eg. feeling thirsty, say "I want juice") become impossible to deal with (eg. feeling thirsty, bang head off door as hard as you can while screaming).

In a few minutes everyone will start waking up and we will have snacks and head out to the wading pool. But right now I'm enjoying the silence.

It never lasts long enough!

Soccer Star!

2009-07-30T07:23:00.000-07:00

Esme had fun playing in the backyard after an evening at soccer practice!

The post in which Esme gets Whatever She Wants. Including sushi.

2009-07-28T05:11:00.000-07:00

Remember when Esme wanted something and would let us know by crying. Or whining. Or grabbing it. Or slapping me in the face...

No more!

Now we hear things like "I...want... Popsicles" or "I... want... swimming pool" or "I... want... Pesh (that's her 'special' teddy bear). Now her hearts desires are only a sentence away. Three simple words have us rushing to get her a Popsicle, or fruit, or crackers, or toys, or to read her a book, or do whatever she asked for. 'Cuz you gotta reinforce language like that, you know. And because its so cute to hear that little voice of hers!

She has even been asking for sushi. Yes, Esme, the world's pickiest eater, painstakingly strung together the words "I.... want... shoo-shi". Her plain rice and plain peas and plain beans did not compare to the lure of sushi. And she wolfed it down like nobodies business.

I will add that it was not sushi full of peas and cauliflower, the only two veggies that Esme will normally eat. In fact, it was full of cucumber! and avocado! And she ate it! And she asked for more!

"More... shoo-shi?"

I guess I'm going to have to learn to make the stuff.

Ba-de-ba-de-ba-de-ba-de-talk?

2009-07-19T18:11:00.001-07:00

Esme has made some huge language gains lately! She is trying really hard to talk most of the time, and has started to imitate two word phrases like "sand-box", "want juice" or "bye-bye Daddy". She has also started doing this thing where she says "ba-de-ba-de-ba-de" before words when she is requesting an item (eg. Ba-de-ba-de-ba-de-popsicle?). It's almost like she knows she's not just supposed to say "shoes" if she wants her shoes, but she can't remember what it is she is supposed to say, so she babbles. It might not seem like much, or might seem like a step in the wrong direction, but to us its another attempt to communicate on our level. She is getting there.

It just takes her lots of time.

Esme likes to take her time. Most of the things she does happen when she is good and ready, and not one minute before.

She usually times it to right around the time I am thinking "Is she EVER going to __________???". I have usually, by this point, read every book ever written on the subject. I have consulted therapists and friends. I am usually about one day away from pulling out the big guns and telling her its my way or the highway!

And then, in her own time and in her own way, she quietly does the thing that was causing me so much anxiety and grief in the first place.

She laughs for the first time. She calls me "Mommy" and not "My". She sleeps through the night. She sleeps in her own bed. She starts saying words. She goes on a carnival ride. She stops nursing (just this past week!).

She starts to put two words together.

In her own way and in her own time, she does it.

With a little help, I know she will find a way to do whatever she wants to do. When she's ready.

Has it really been this long....

2009-07-10T18:03:00.000-07:00

since I last posted? Sheesh. Sorry, I will make up for it by posting some cute Esme pics. Prepare yourself!

Esme at the beach...

Who needs a lake when you can just dig yourself a tepid pool of muck?

And here is Esme on her very first (waaaaaay over priced) carnival ride...

In line with Daddy...

"One ride, please"

Ready for take-off...

Around she goes! Esme's first time on a ride all by herself!

Of course, she had to do it again...

And then one more time. Before we dragged her home.

We've been having lots of summer fun around here. Esme's therapy is going well, I have started a preschool / babysitting service out of my home, and Cameron is on a two-week vacation / lay-off!

Busy, as always, but we are enjoying our summer!

2009-06-29T19:54:00.000-07:00

It's been wild around here - I am up to my eyeballs in paperwork, and I can't seem to get any of it done... there is just so much to do, documents to find and fax... ugh.

Tomorrow we are off to Esme's DAN! doctor (Naturopath). Then Esme has her first gymnastics class!

She's pretty busy for a two year old.

Right now I have to pack us a bag for the day, because the naturopath couldn't be in our city, of course. We have to drive an hour to get there. In rush hour. Oh, and by "we" I mean my husband, Esme and I. Because I don't drive. So Esme and I get to hang out for the rest of the day while Cameron goes to work (luckily, he works right down the street from the Naturopath).

Thank goodness my aunt lives nearby, so Esme and I will spend the day with her! Otherwise we would be stuck in a mall all day... bleh!

Will post pics soon, fear not!

Catching Up...

2009-06-23T04:50:00.000-07:00

A lot has been happening around these parts...

Esme had her first soccer "practice". She actually really enjoyed it a lot, and kept up with the other kids no problem. If it wasn't for the fact she doesn't talk, you would just think she ran around a little bit more than the other kids. Gross motor activities are her current forte. If only soccer was played in the pool, she would be in heaven. Maybe I should look into water polo...

Father's day = Fun with Daddy and swimming in Grandpa's (Grampy) pool. This was our first father's day since Cameron's dad passed away, so the day was bittersweet, but Esme woke her daddy up saying "Happy. Daddy. Day." which was cute beyond words. She had made everyone a cement step-stone for the garden, with a hand print and / or glass beads in it, and she made everyone press her hand into it to 're-d0' her hand print. We went with Esme and Nanny (Cam's mom) to a little farm to see the animals. Esme liked looking at the ducks and fish, but mostly enjoyed the park at the end of the farm. What can I say, the kid loves to swing!

Today is our last day of our special needs singing group. I am sad, as Esme has really done well in the class, and has looked forward to going every Tuesday. I hope I can stay in touch with some of the families I met there - even though our children have (sometimes very) different challenges, it is nice to meet other parents who are dealing with children who don't follow the typical developmental path. After class we usually go swimming, which is Esme's favourite part, of course.

And it is official! Esme will receive full time support in preschool next year. I didn't really doubt she would get a full time aide, but I was a bit worried, as she really will need the one-on-one help to succeed. I am so hoping that preschool is a success for her - I know she will learn so much from watching the other kids. Maybe even, oh, I don't know, potty training?

A mom can dream!

And finally, here is a picture of Esme making sure she doesn't get her dress wet in this puddle. You can never be too careful.

June 17th

2009-06-17T06:55:00.000-07:00

Three years ago today Cameron and I got ourselves married! It seems weird to say "3 years" because we have been dating since we were 16/17, so we have been together a lot longer than 3 years. And I must say, our first 3 years of marriage have been far from easy - having a baby, buying our first house, having aforementioned baby sick all the time, searching for diagnosis for baby, getting diagnosis, dealing with a million Dr's appointments, going down to 1 income, more Dr's / therapy appointments... it hasn't exactly been easy street.

I couldn't imagine going through this all with anyone else.

It isn't always easy. Sometimes its downright hard. But it's always worth it.

Tonight we are taking Esme to her first soccer practice (yes, soccer for a 2.5 year old. I will keep you posted on how it goes!). Then we will put Ezzy to bed, get some take-out, watch a movie, and remember what we were doing 3 years ago when we said our "I do's". Maybe not the most extravagant anniversary, but watching a movie with my husband, in our home, eating a 'fancy' take out meal, with our daughter sleeping peacefully upstairs after her first (official) day of IBI and her first soccer game... what else could a gal ask for?

New (and handmade) Doll

2009-06-16T19:01:00.000-07:00

I got a new doll!

She likes my swing.

If there is anything better than a new 'baby', I don't want to know about it.

Thank you so much for my new doll!

Esme Lyra - Outdoorsy Type

2009-06-14T18:32:00.000-07:00

Cottage life. Yes, its the life for me. This weekend we went to my Great-Aunt and Great-Uncle's cottage!

I got in a bit of fishing with Grandpa...

Some arts and crafts with my cousins...

Made sure I woke up just in time to see the sun rise...

Took a boat ride.

And a ride in the canoe...

And spent some time enjoying the outdoors with my friends.

I don't know how I will adjust to city life after this. Sigh. Life can be rough for us outdoorsy types.

Thanks to my family for the great weekend!

Her Path

2009-06-09T20:08:00.000-07:00

“If the path be beautiful, let us not ask where it leads.”

- Anatole France

What's new with Esme

2009-06-06T13:13:00.001-07:00

Esme has been up to all kinds of things lately, the most important of which... she started her IBI therapy this week! It went really well, and I think she is going to like her therapist, which is so important. We just had our first 'team' meeting for the therapy, so we are not officially started yet (that is next week), but we've all met and are ready to go!

Esme has also been quite chatty lately, and has learned a few new skills. She is 'singing' along when I sing her favourite songs, like "Wake up Toes" and "Pie". She is counting to 20, although 10 - 20 are jumbled up a bit.... but she's getting it. She is saying "hello" and "bye". She is responding more to her name, and is especially listening when I yell her name, if she is in danger or is being naughty - something she didn't do before!

On the bad-ish side of things, she has also developed some echolalia from her favourite TV show (Pocoyo) and is heard repeating lines from the movie now and then. The good part is that she is saying more than one word at a time when she does it, but I do wish her first sentence could be more comunicative than "Please dance, Pocoyo, we want to!". It is nice to hear her stringing words together, and I know one day soon she will be able to make up her own sentences and not rely on Pocoyo's help!

And right now shes just waking up from a 3 (!) hour nap. More updates to come!

How-To-Donkeys (by Esme)

2009-06-01T20:02:00.000-07:00

Hello all, its Esme again! This time, I'm exploring the Donkey Sanctuary!

It's important to note that one should not pick up every 'stick' one sees when around large animals. You never can tell. You will be happy to know that, upon closer inspection, this was indeed a stick of the 'tree' variety. Pheuf.

Here I am, picking out a brush. Donkeys, get ready to be beautified!

Paco, you are looking better already!

"Oh dears! Mess!"

Enough of this donkey brushing business. I'm gonna cuddle here inside Daddy's shirt and watch this strange horse....

Nice!

Up!

2009-05-30T19:47:00.000-07:00

Esme saw her very first movie-in-a-movie-theatre today... Up! We decided to not go to the 3d version, as wearing 3d glasses and having things popping out at her may have spelled disaster for our first movie. We played it safe with boring ol' 2d.

She really enjoyed it, and sat nicely for 1.5 hrs (counting the 30 minutes of previews!) before getting off her seat and rolling around on the floor (yuck.). In honor of this momentous occasion, we got Esme her very own cup (read: bucket) of fries and some juice to enjoy during the movie. She polished off the fries a short time after the previews finished, and the juice box was done soon after.

We heard a lot of "Wow"s and "Look!"s. She laughed out loud a few times and delighted in looking at her daddy every time something funny happened so they could laugh together.

All in all, Esme gives the movie two thumbs up... or should I say two fist pumps with a great big "Yyyyyyes!"

Springtime

2009-05-29T19:52:00.000-07:00

Spring sun brings dandelions

Abandoned shoes

And a girl

How-To-Zoo (by Esme)

2009-05-25T18:02:00.000-07:00

Hello loyal Esme readers. It's me, Esme! Here are some pictures of my latest outing... the Toronto Zoo!

Here I am with my traveling companion, Pink Bunny Jr.

First things first, let's get rid of the dead weight in favour of a more lively travel companion. Sorry Pink Bunny.

Ah, a little boy makes for a much livelier zoo excursion. This one walks a little slow sometimes - always wanting to stop to look at the animals and such. But no bother, I can hurry him along.

Tips for a great date #1 - check out the local music scene.

#2 - Find interesting things to talk about. Rabbits, for instance.

#3 - A walk on a sandy beach is always romantic. Shovel and pail are optional.

#4 - If your taste in music, titillating conversation and romantic gestures don't get 'em, you can always show off your physical prowess.

Peuf, all this excitement. I need a break. Now that we've got dating covered, I will share with you some of my knowledge about the animal kingdom.

As far as I can tell, this is a squirrel eating celery. My mom tried to tell me otherwise, said something about a Prairie Dog and grass... but if I'm not mistaken (and I very rarely am), that there is a squirrel. Eating celery.

These are fish. Giving them any other name is redundant. Fish will do it. Anything else is just showing off.

What we've got here, friends, is a bird. It's best to hide behind a friend when coming across one of these. One can never be too sure with birds.

When observing animals it is best to get up as high as you can. The more dangerous your perch, the better.

As you can see, the alternative perch leaves a little to be desired.

Well, that about does it for me. I'm off on another adventure.

Come on buddy, let's get moving.

Bridge

2009-05-23T06:55:00.000-07:00

Sometimes, if you stand on the bottom rail of a bridge and lean over to watch the river slipping slowly away beneath you, you will suddenly know everything there is to be known.

Winnie the Pooh

Thank You

2009-05-14T18:36:00.000-07:00

To everyone who is helping us reach our fundraising goal,
To everyone who is sending messages of support,
To everyone who has given us ideas, information or help,
To everyone who has been keeping Esme in your thoughts and prayers,

Thank you.

I don't think we ever could have imagined the outpouring of support we have received these past few weeks. When I started fundraising for Esme's therapy, I was told not to get my hopes up. That people would not help. That raising that kind of money in a short time was impossible.

But I refused to even let it enter my mind. We would raise the money. Esme would have the therapy she needs. We would do it. I forced myself to trust 100% that the money would be there when we needed it.

At first there were drops. Little raindrops of help. 10 dollars here, 30 there, an idea here, a plan there...

Then a trickle. Then a downpour.

People we haven't spoken to in years, good friends and acquaintances, friends of friends, friends of friends of friends, all doing what they can. Someone is having a garage sale, someone is organizing a dinner party, a concert, someone throws a luncheon at work, someone is asking for donations in lieu of birthday gifts, someone is thinking of Esme on the other side of the country, on the other side of the world, on the other side of the street. And drop by drop we are reaching our goal.

It is far from impossible. It is possible. Because of people. Not because of government, or some big business, but because people have said 'I care, here's what I can do.' Because Esme and our family has been surrounded by love and support.

We are getting there.

Today we met with the therapist who will be leading the therapy team working with Esme. She will be starting therapy in the next two weeks or so.

The impossible is happening.

Because of You

And all we have is words, which are so inadequate,

For doing what you do not have to do, for remembering Esme, for believing in her, who she is and who she will become,

Thank you.

Friends

2009-05-08T10:49:00.000-07:00

Don't walk in front of me, I may not follow.

Don't walk behind me, I may not lead.

Walk beside me and be my friend

Best Buddies

2009-05-07T16:08:00.000-07:00

Tomorrow we have one of Esme's best friends coming for the day. He used to be one of my "daycare kids", and we try to have him come for a visit now and then. Esme loves him and they play very well together - not every kid knows what to do with Esme, as she sometimes acts like other children aren't in the room and can get upset if they come too close to her. She has a few friends who know the way to her heart... chasing. The girl loves to be chased.

I am sure the day will be full of screaming, running, chasing, and crying (you know, when they fall down because of the aforementioned chasing and running.)

Sometimes I miss the hustle and bustle of a bunch of kids in my house. I miss the screaming and laughing and playing and madness that is a home daycare.

And then I, you know, come to my senses.

But I am looking forward to tomorrow. Watching Esme and her buddy hug and kiss is the sweetest thing you can imagine!

Top 10 Great Things About Ezzer

2009-05-03T19:17:00.000-07:00

10. The way she smells every flower and plant she can get her hands on (including grass) with an exuberant inhale and a satisfied "Ahhhhh" every time.

9. The way she quietly sings to herself, hitting only the important words, like "Yes... name... Piggle..." or "Now...C... next... me" or "Bus.... round.... town".

8. The way she knows the words to all of her favourite books, and the way she grabs your head and turns it back towards the book if you dare stop reading for a moment.

7. The fact that all her phone conversations go something like "Hi.... Love... Bye". With some prompting.

6. Her new favourite game - Bouncing up and down (or having a toy bounce up and down) while saying "Bum... Bum... Bum!". And giving anyone who doesn't know what that means a condescending look.

5. The way she always mixes up Mommy ("My") and Daddy ("Da-ee"), and the way she laughs and shakes her head when she corrects herself.

4. The way she says "Oh dears!" when something goes wrong.

3. Her new phrases "Tickle me", "Chase me" and "Kiss me" and the way she tries to use "me" in every context now (eg. "Book me", "Bubble me" and the all-encompasing "Me!")

2. The quick kisses she gives out as she goes about her day.

1. The way she makes us thankful for so many moments that we might have otherwise taken for granted.

Every now and then...

2009-05-01T19:16:00.000-07:00

Every now and then I am just filled with an overwhelming sadness. Most of the time I hold it together, and I enjoy my daughter, and my time is filled with advocacy, playing, appointments, friends, day-to-day stuff... just the usual mom things, plus the extra special-needs stuff thrown in for good measure. But now and then I get really, really sad.

Sometimes I imagine Esme saying things like "What's that, Mama?" or "I play with my friends?" or "I don't like that." or all the cute things I hear other 2.5 year olds saying. I wonder what it would be like to be called "Mama" or "Mommy". I wonder what her voice would sound like, stringing those words together, without Autism slowing her down, making each word she does have painfully slow and mispronounced. I imagine what it would be like if Esme looked at me like other children look at thier moms - showing them things, always wanting attention. I imagine her playing dress up and house, saying "You be the baby, I be the Mama". I imagine eye contact, two words together, three words, more, I imagine planning her future without "If she can talk by then..." or "If she is able to sit at a desk..." or "If we have the money" or all the other "ifs" that bounce around my head.

And I know this post is supposed to end with "But then I look at Esme and realize how lucky I am to have her just the way she is". And I am lucky. She hugs and kisses me. She smiles and looks into my eyes. She tries to talk and communicate. Most of the time I am 100% grateful to have Esme in my life.

But tonight I just want to scream "This isnt fair! This wasnt supposed to be like this!"

Sometimes I just want the Esme I let myself imagine, now and then.

Update and thanks

2009-05-01T06:33:00.000-07:00

So, what's Ezzy up to these days?
How about....

Saying her first 2 word sentence.... Chase me!
Telling us "Love!" all the time. (OK, it sounds more like "Lop", but we know what she means)
Going down slides at the park! (she's been afraid of this all year)
Saying her friends names. Or trying to.

And all sorts of other things. I am so hopeful about all the things she will learn to do once we get the therapy underway. She is learning so much these days.

And if you were wondering...
So far we have raised enough money to pay for.....

2 and a half weeks of therapy! Yahoo!

Pretty good for one week of fundraising, if I do say so myself. We've got fundraising ideas we are banging around, so we are hoping that total will skyrocket once we get those underway.

And if you were wondering... a week of therapy will cost around 150 dollars. A day - 30 dollars. You can only donate 10 dollars? That's 30 minutes of therapy. Who knows what Esme could learn in those 30 minutes.

Thank you all - those who have donated, those who are reading this blog, those who keep Esme in their thoughts and prayers, and everyone who is helping us out as we plod along.

Thanks.

Steps

2009-04-29T20:04:00.000-07:00

There is no one giant step that does it. It's a lot of little steps.

Peter A. Cohen

The first drop...

2009-04-28T18:30:00.001-07:00

My dental hygienist gave me 10 dollars today, to put towards Esme's therapy. I have never met her before. I was telling her a bit about Esme and she handed me a ten dollar bill. "For your daughter" she said. "I know it's not much".

The first donation we have received.

And yes, just a drop in the bucket.

But I have faith that it will start to fill up, drop by drop.

2009-04-24T05:15:00.000-07:00

Esme was officially diagnosed with Autism on Wednesday April 22nd. It is strange how sad we have all been after recieving the diagnosis - we really did not question whether or not she had autism. Her level of affectedness has been assessed as "severe", so that was a bit of a downer. I was really, really hoping they would say moderate. How weird is that! I guess we all hold on to some hope that things arent as bad as they seem.

With the diagnosis comes access to some new services - unfortunatly, the wait list for therapy is around 2 years. I cannot wait any longer, it is not fair to Esme to deny her the therapy that she needs to be able to function in the world.

We will have to go for private therapy while we wait.

We will have to raise the money.

A lot of it.

But its for Esme. I will figure it out.

She is happy. She is alive. She is progressing and learning and loving.

And we love her to bits.

The Big Day (tomorrow)!

2009-04-21T14:12:00.001-07:00

Tomorrow is the big day. We go back to see the developmental pediatrician and (hopefully) get a diagnosis. I am feeling pretty good about everything - I think it will be a good thing to be able to put this diagnosis search behind us. In any case, I feel like we have accepted that Esme does have autism, and are moving forward with that. The diagnosis will just make it official for everyone else!

On other fronts, we have begun attempting potty training Esme. Or 'potty learning', if you prefer. We had a good couple of days, but today has been The Day of Very Large Pee Accidents. On the floor. And couch.

Nothing like cleaning up a puddle of pee to keep you in the moment.

2009-04-14T13:06:00.000-07:00

Failure will never overtake me if my determination to succeed is strong enough.

- Og Mandino

We made it!

2009-04-08T14:52:00.000-07:00

After all the fuss, we made it. Esme's assessment is done, and (hopefully) we will have an official diagnosis in two short weeks.

I think it went pretty well - Esme played in the room with the therapists while we spoke to the doctor, and by the sounds of it she was not very interactive or verbal... which is how she usually is when shes not with Cameron or myself. Just how we wanted her to act, so they would have a fair view of what kind of behaviours we are concerned about.

I get the feeling that the diagnosis isn't in question too much, and I am really hoping we can close this "finding a diagnosis' chapter in the next few weeks.

As much as it sucks to know that your child has so many challenges, it will be good to have a diagnosis. I think.

After a long morning, we hit the park and did some swinging.

Nothing like swinging after a stressful day.

Full-steam ahead... I hope.

2009-04-07T19:44:00.000-07:00

No fever today! Esme was her usual happy self, although she started to act pretty grouchy by the time bedtime rolled around. I am hoping that was only because she didn't nap today, and not because she will wake tomorrow with another fever!
So, we're off tomorrow for our assessment. Hopefully it goes off with as few hitches as possible!

Darn that Murphy and his laws!

2009-04-06T19:36:00.000-07:00

Two days until Esme's assessment. The assessment we've been waiting almost a year for. The assessment we almost paid 2000 dollars for. The assessment that is now being covered. The assessment that will ideally give us a diagnosis and let us start getting more services, or at least on waiting lists for services. The 2-plus-hour, intensive assessment. Ya, that one.

And guess who's sick.

The "assess-ee" herself, Ezzy.

Fever.
No appetite.
And... ahemm.... other unmentionable symptoms.

She is in pretty good spirits, so as long as shes not any worse tomorrow, I will go ahead and keep our appointment.

But Esme doesn't like to do anything the easy way.

Life's just too boring that way.

Phone calls

2009-03-23T13:51:00.000-07:00

Today I was in the other room and heard "Beep.... beep.... beeeeeeep" coming from Esme's general direction. I popped my head around the corner to find Esme with the phone to her ear, chatting away, pressing a few buttons here and there, for effect. I asked her what she was doing and she held the phone out to me and smiled and said "Phone!".

Pretend play? Immitation? Babbling? Eye contact? Answering a question?? How far she has come in only a few months. I love this kid!

And for no other reason than showing off how cute she is...

The Assessment and Knowing-For-Sure

2009-03-13T11:28:00.000-07:00

It's almost here. Esme's assessment. Only three weeks to go, after a delay of a little over a month. But I won't complain too much about the delay, as her assessment will now be covered, saving us a nice chunk of change. Which we most certainly can use.

At speech therapy today our speech therapist promised me that we won't walk out of the assessment without a diagnosis. She said that if they don't diagnose Esme with autism she will personally call them and ask them if they are crazy! Still, I am nervous. Worried that they will say its not Autism and we will still be looking for a diagnosis. Worried that they will say its not Autism and we will be denied funding for therapy, denied an Inclusion Facilitator at preschool, denied funding for respite and therapeutic leisure activities. Worried that they will say its not Autism and we will be nowhere closer to a diagnosis and nowhere closer to moving past this stage.

And I am worried they will say its Autism. Worried about how we will cope knowing for sure. I mean, we know for sure now. But that will be for-sure-for-sure.

Of course, Esme won't change. The girl we bring into the assessment room will be the same girl we leave with. Our funny, beautiful, smart, hardworking, loving, friendly, wonderful girl.

I just hope hearing the words "Your daughter has Autism" wont change us.

Listen...

2009-03-12T20:17:00.000-07:00

"Listen to the mustn'ts, child.

Listen to the don'ts.

Listen to the shouldn'ts,

the impossibles,

the won'ts.

Listen to the never haves,

then listen close to me...

Anything can happen, child.

Anything can be.”

- Shel Silverstein

Pics

2009-02-28T10:11:00.000-08:00

Sifting rice

Sunny day

Puzz.

Ezzy

Esme's gifts

2009-02-17T05:57:00.000-08:00

My Valentines Day gift - watching beautiful Esme dancing and clapping and cheering with a bunch of kids while watching a band play kids music. At first she held back, but by the end she was up at the front with the throng of wild kids, jumping and dancing and laughing, just like anyone.

A Big Day!

2009-02-08T05:42:00.000-08:00

We did it. I thought I never would. At first I was so excited, but now I am filled with dread and sadness....
We signed Esme up for school!
A preschool in our city has been really really recommended to us as the best preschool in the area, and great for kids with special needs. I was looking through our free twice-weekly newspaper on Friday and saw that their open-house and registration day was Saturday. So we went. And we signed her up. Three afternoons per week. Baaaaah! I'm freaking out already!
She loved it there and was quite upset to leave. The teacher we met had worked at the preschool for 16 years (and was the 'new' girl!) and the president of the board of directors' son also has autism. We will apply for a full time aide when we get Ezzy's official diagnosis, but she might not get the full three hours covered. We hope so, because without an aide she probably will have problems playing with the other kids.
It will be good for Esme to have kids to interact with on a regular basis, but for a shorter amount of time per day than full time daycare. She will be almost 3 years old when she starts at the school in September.
That gives me 7 months to prepare!

Another week...

2009-02-06T10:18:00.000-08:00

Pheuf, what a busy week! On top of our usual 3 days of babysitting, we had family up for a couple of days, visits from friends, an OT assessment and our usual speech therapy. Plus around a thousand phone calls to other ASD parents and therapists… you know, the usual.

Esme loved having her uncle and grandma up for a visit this week. She is pretty smitten with her uncle – he is one of the few people she will ask to pick her up. He taught her a new game where she pretends to eat her play food and says “Mmmmmm! Yumyumyumyumyum”. She cackles like a wild-woman when we do it back to her!

The Occupational Therapy assessment went well. I thought I would have to really fight to get her therapy, but they seemed to assume she would qualify from the moment I walked in there. I know she will qualify once she has an official diagnosis of ASD, but I wasn’t sure what would happen with a ‘suspected ASD” diagnosis. Her fine motor skills aren’t bad, but her play and social skills are very delayed. Her play skills have come so far in the past 6 months (she didn’t play with toys at all before then), but she is still not age-appropriate. In any case, she should be starting OT in the fall, or earlier. These waiting lists are killer – a six month wait is nothing! Our speech therapy won’t be covered until the fall (a 14 month wait from when we were referred) – we are paying out of pocket for a private therapist now. Anyone who knows how important early intervention is understands how terrible this wait is.

At speech therapy today I asked the therapist if she thinks there is any chance that Esme will not get an ASD diagnosis. She said no, Esme will be diagnosed. She is sure of it. My big fear right now is not getting a diagnosis (and not only because it is costing us and arm and a leg to have the assessment done!). I just want it to be official so we can accept it and move forward. Two weeks from today is our first appointment with the psychologist for Esme’s assessment. We will see her two times after that before we have an answer. I hope the appointments are not spread too far apart, but we will see.

Until then, we will keep on truckin!

Speech Therapy

2009-01-30T11:09:00.000-08:00

Another day of Speech Therapy today. We left the house at 9:20 to get to our 10:30 appointment (taking the bus turns a 30 minute speech therapy appointment into a 2 ½ hour trek across our city!). Esme did so well waiting for the bus today – no crying or running away at all. While we waited, we practiced saying farm animal names. So far, Ezzy can say: horse, cow, chicken, duck, dog, cat, mouse and owl. Her pronunciation and prosody (the stress and intonation of her words) are far from where we would like them to be, but the fact that she tries to repeat these words is huge!

When we got to the office, we had a 30 minute wait until her appointment. The waiting room is filled with toys, so Esme sat down with the school bus and filled it up with Little People. I read two year old Reader’s Digests. After a few minutes, Ezzy came up to me with a stuffed dog and pushed it onto my lap. She started crying and wildly waving her arms around, contorting them in odd positions. She does this when she wants something but has no words to tell me what it is. Luckily I speak fluent “Esme”, so I knew that she wanted the stuffed dogs clothes to come off (it was wearing a baseball uniform. Of course). If there is one thing Esme cannot stand, its stuffed animals (and some dolls) wearing clothes.

When it was our turn to go in, Esme started freaking out, screaming “Bear, bear!” (We had left the dog out in the waiting room and she wanted it). She was also tired after waking up at 6:30 am! Once she settled down, she started working with the farm animal magnet board. The speech therapist would hold out a magnet and Esme would have to say the name of the animal. She tried her best to avoid having to say the names (despite our practice session while waiting for the bus!), but the lure of those little magnets won out in the end and she named all of them. Her favourite was the bee! When she saw the bee magnet she laughed and yelled out “Bee! Bee!” without any prompting at all. The next activity was following the direction “Get ______ “ (eg. Get Bee). Esme has so much trouble with this. Even though she knows what the bee magnet looks like, she cannot / does not follow the direction. She needed some hand-over-hand help, but after a while she followed a few of the directions. The problem is that she would rather get the magnet she wants to get, and really she couldn't care less if the Speech Therapist wants her to “Get Bee”. She wants to Get Cow.

All in all, it was a good session. Our speech therapist says that she is amazed at how far Esme has come in only a few weeks. She works so hard, at therapy, at the therapy we do at home, and just in her day–to–day activities. It’s not easy for her, but she keeps on trying!

Positively Autistic

2009-01-26T06:25:00.000-08:00

I watched this video this morning...

Positively Autistic

I think this is a wonderful video, showing that autism is not a tragedy, that our children are not ruined or doomed to live an isolated, sad life.
I guess I differ from the mother in the video a bit, because I am treating Esme's autism. I am trying to help Esme become more typical through therapy, diet and biomedical treatment. And yes, I do have some mixed feelings about it. I want her to be herself, and love herself, and to know that there is nothing wrong with her. At the same time, I want her to be able to communicate, and get along in the world, and hold down a job (a job she loves, not just the only job she can do), and to enjoy the world around her. While I say we are trying to 'recover' her from autism, what we really mean is that we want to help her brain and body work better than they do.
I believe that Esme was born with autism, but something happened in her second year that caused her body and brain to spiral out of control. We want to get her back to a state of health, and help her catch up with the developmental things she has missed. I do not believe that Esme will ever be non-autistic, but what we want is for her autism to be a gift, not a detriment.
It's a scary thought to me to think of a world where we have gotten 'rid' of the autism gene, or the gene that predisposes people to developing autsim in any form. Certainly it would be wonderful to have treatments for children and adults who are severely affected, and these treatments are most definetly needed. But imagine a world without autism... who would be writing computer code, solving mind-boggiling math equations, figuring out physics conundrums, writing beautiful music... a world with no differences would be a boring (and scary) world indeed.

Ezzy's Pappy

2009-01-26T06:02:00.000-08:00

We will miss you, Pappy.

Speech therapy

2009-01-16T15:27:00.001-08:00

Esme did so well at speech therapy today. It amazes me how quickly she can adapt - her first session was spent fighting, avoiding, crying and trying to escape! This time, with only one session under her belt, she was trying to follow directions, attempting some words and really attending to the toys on the table. What a change from the first session! Even her therapist was surprised that she is adapting so quickly to the demands of therapy.
Don't get me wrong, she still complained, whined, threw herself on the floor a couple of times... but when it came down to it, she did the work and tried her very best to do what was needed.
Way to go, Esme!

Appointments Galore!

2009-01-15T10:32:00.000-08:00

Add another 2 specialists to our roster! We made an appointment with the psychologist to do the diagnostic test for Esme. Only a month wait - that is so much better than the 18 month wait we have been looking at. We do have to pay for it, and it isn't a small amount, but it will get us what we need - a formal diagnosis so we can start receiving the services Esme needs. February 20th is our first appointment, but she will see us 2 or 3 more times after that before we get our results. It is a fairly in depth diagnostic tool.
We also are in the process of booking an appointment with a DAN! doctor for biomedical treatment. He is about an hour or so away, so it will be a challenge to get there for treatments, but we will make it work. That appointment should be in March or April. I will find out for sure tomorrow.
We are still waiting to make our appointment with the occupational therapist, though I don't think we will get in to that therapy until the summer or fall.
Esme currently attends speech therapy once a week and will start more in the summer or fall.
Esme's dance card will be pretty full for the next little while. We do get out to playgroups now and then, and I babysit a few times a week, so she does have some friends to spend her free time with.
This week we went to a large playgroup with some friends. It was so heartbreaking to see what a difficult time Esme has in a big group, and how far behind she is with her language, play and social skills. I know she will improve with time, but I hate that this has to be so hard for her, when it comes so easy to most other children.
A lot of the time I feel so frustrated, it just doesn't seem fair that we have to be dealing with all of these specialists and challenges when we just want to be enjoying our daughter. But then she will ask to cuddle or give me a kiss and I count my blessings.

A little about Ez

2009-01-12T20:17:00.000-08:00

Esme was a great baby - she cried all the time, slept very little and needed to be held 24 hours a day... all that great baby stuff! She hit all her milestones right on time - she sat up at 5 months, walked at 11 months, and said her first words before her first birthday. She was a happy, healthy girl who loved to look at books, watch movies and play with her daddy! She was a little bit distant at times, but we just figured she wasn't one of these jolly babies who laugh at everything and anything.

When she was around a year old, things started to change. I started a home daycare and Esme began getting sick all the time. She ran very high fevers almost daily for months and was very unhappy. She would sometimes have seizures when the fevers got very high, and Cameron and I spent more than one evening at the emergency room with our little one. Finally spring came and the illnesses stopped. We breathed a sigh of relief. Esme was feeling good and was doing great. She was a little under a year and a half and had 18 - 20 words, though some of them were in Esme's "special language', she was a great communicator when she wanted to be.

When she hit 18 months she suddenly lost all but one or two of her words. She became very withdrawn, did not respond to her name and made very little eye contact. Needless to say, we were very concerned and booked an appointment with our doctor and with WeeTalk, a speech and language agency where we live. Since then we have been to all kinds of specialists. While we are still waiting for an official diagnosis (waiting lists for a diagnosis are 12 - 18 months long), her doctors and specialists agree that Esme has autism or ASD (autism spectrum disorder). We should get our diagnosis in the spring.

Until then, Esme attends speech therapy once / week. We are on the waiting list for Occupational Therapy and additional speech therapy. Once we have a diagnosis, other therapies will become available to us. While we wait for a diagnosis, we have also started some biomedical treatments and some ABA therapy at home (I was an ABA instructor therapist before I had Esme).

Esme is now 27 months old and is already making some gains. She is much less withdrawn these days, and makes pretty good eye contact - especially with Cameron and I. She has learned a few new words and signs, and is beginning to learn to use them to ask for things. She is learning to point and to follow a simple direction - though she fights us at every request! She is very strong-willed and figures out how to do anything she's put her mind to.

Esme is loved by so many people. This blog is to keep everyone updated about Esme's progress and to keep a record of Esme's story as she recovers from autism.